tbuckley/cabot-search huggingface dataset:
Trends in place of death in adolescents and young adults dying from cancer in the US, 2003-2019.
Authors: S. M. Qasim Hussaini, Amanda L. Blackford, Ramy Sedhom, Arjun Gupta
Journal: Journal of Clinical Oncology (2023)

12029 Background: Adolescents and Young Adults (AYAs) face unique social challenges in navigating care at end-of-life (EOL). Place of Death (PoD) is an important determinant of patient and caregiver preference, access to home-based supportive care, and cost of caregiving at EOL. We sought to describe disparities in PoD in AYAs who died from cancer between 2003-2019. Methods: We used deidentified death certificate data via the CDC Wonder database. We included decedents aged 15-44 years with an underlying cause of death from cancer (through ICD codes) from 2003-2019. We stratified findings by age, race/ethnicity, sex, cancer site, and urban/rural metro status. We classified PoD as (1) medical facility (2) nursing home (3) home, or (4) hospice facility. Odds ratios (OR) for the association between PoD and geographic region were calculated using multinomial regression, adjusting for year of death. Results: We included 301,886 AYA deaths from cancer (53.9% female, 15.6% non-Hispanic Black, 18.4% Hispanic, 15.6% rural, 28.6% breast, 19.9% colorectal, 18.4% lung, 16.9% brain, 16.2% leukemia). From 2003-2019, deaths in a medical facility reduced from 11,579 (52.7%) to 7,952 (49.5%), home from 8,630 (39.3%) to 6032 (37.5%), and in a hospice facility increased from 152 (0.7%) to 2,245 (14.0%). Compared with older adults (&gt;45), AYAs were 42% and 37% less likely to die at home or in a hospice facility than a medical facility. Within AYAs, similar trends were noted for Hispanic and non-Hispanic Blacks when compared to non-Hispanic Whites, and rural residents when compared to urban residents. AYAs with leukemia were most likely to die in a medical facility and least likely in hospice, brain cancer most likely to die at home or in a nursing facility, while colorectal and breast cancers had equal uptake of hospice. Conclusions: AYAs have lower hospice uptake at EOL with notable sociodemographic, geographic and disease-site specific variation. These data likely reflect complex treatment planning and care access/preference at EOL. Dying at home may be unattainable for AYAs, unless they are able to afford help or have family who are willing to be caregivers. Future work investigating whether the offerings of hospice meet the basic care needs of AYA with cancer at EOL is necessary. [Table: see text]
Experience of a stem cell transplant in multiple myeloma: The patient and care partner perspective.
Authors: Doris K. Hansen, Todd Bixby, Karen Fixler, Lisa Shea, Christine Brittle, Kimberly Brunisholz, Yi-Hsuan Liu, Jinhai Huo
Journal: Journal of Clinical Oncology (2023)

e18790 Background: Understanding patient experiences of their multiple myeloma (MM) disease journey, particularly related to the burden of autologous stem cell transplant (ASCT) and treatment recovery process, helps characterize unmet needs and quality of life of patients and their caregivers. A qualitative study of the experience of patients with MM who received ASCT and perspectives of caregivers was conducted. Methods: Recruited participants with MM were ≥18 years of age and received ASCT within the past 5 years or caregivers of patients who met these criteria. Two virtual focus group interviews were conducted, in which patients and caregivers were asked separately to narrate their disease journey starting with first symptoms and diagnosis, then focusing on the ASCT and recovery period. Results: A total of 16 participants, including 12 MM patients and 4 caregivers, were included. Nine participants (56.25%) were less than 60 years old, and eleven (68.75%) participants were female. Study participants were diverse in race/ethnicity; one-third of participants were Black and one-third comprised other minorities (Hispanic, Native Hawaiian, Asian, and Multiracial). Pain, weakness, and fractured bones (femur, hip, or spinal fractures) were common first symptoms. Other common patient-reported symptoms included high blood pressure, blurred vision, more frequent illnesses, unsteady gait, and anemia. The patients in the study were first diagnosed with MM in a variety of ways, mostly by a primary care physician and some in urgent care settings. The diagnosis process could take up to six months for some patients and commonly a community oncologist referred patients to a bone marrow transplant specialist, who was the primary driver in making ASCT decisions. Eight patients received their ASCT in an inpatient setting and four patients in an outpatient setting, with three eventually being hospitalized due to complications. Only one patient stayed in an outpatient setting the entire time. Initial recovery time after ASCT ranged from 2 weeks to 4 months; complete recovery took from 30 days to “never.” The most patient-reported difficulties during recovery time included nausea, loss of appetite, weakness, fatigue, and pain. Caregivers played an important role in the recovery process and often with negative financial impact related to missing work and travel expenses. Conclusions: Patients with MM who received ASCT and their caregivers perceived various unmet needs throughout their transplant journey. Post–stem cell transplant symptoms had a substantial impact on patients’ quality of life, especially with lengthy and challenging recovery. Innovative therapies are needed for newly diagnosed MM to reduce the burden of disease and enhance the quality of life for both patients and their caregivers.
Use of clinical pathways to identify patients with cancer who may benefit from serious illness conversations.
Authors: Cody E Cotner, Angela Tramontano, David Michael Jackman, James A. Tulsky, Joseph Jacobson, Matthew Rice, Alex Post, Brian Finn, Sishemo Mwesigwa, Charlotta Lindvall, Alexi A. Wright, Christopher Manz
Journal: Journal of Clinical Oncology (2023)

12027 Background: Treatment pathways are widely used to provide decision support and encourage guideline adherence. Pathways data may be used to identify patients for targeted interventions to improve cancer care. For example, pathways data may enable the identification of patients with poor prognoses for whom serious illness conversations (SICs) should be prioritized to ensure goal-concordant care. Methods: For patients starting new therapies at Dana-Farber, oncologists select a node in clinical pathways to indicate the line of treatment. Subspecialty oncologists identified “poor prognosis” nodes in pathways, defined as therapies for patients with expected survivals of &lt; 12 months and for whom an SIC would be appropriate (e.g., 3 rd -line treatment for metastatic colon cancer). Pathway node navigations for patients with metastatic solid tumor malignancies with poor prognosis nodes (n = 21 disease pathways) were combined with electronic medical record data to identify SIC documentation in an advance care planning module within 6 months of pathway navigation and patients’ dates of death if present. For each node, we calculated the median overall survival (OS), the proportion of patients with an SIC, and the proportion of patients who died before reaching the next node. Results: There were 10,132 navigations for 7,031 patients (median age 67 years, 52% female, 86% White) between 8/16/2019 and 1/4/2023. With each treatment line, patients’ median OS decreased and SIC rates increased (examples for 3 diseases in Table). Among patients who reached poor prognosis nodes, the median OS was 4.9 months, mean SIC rate was 43.8%, and 60.2% of patients died without reaching a subsequent node. For nodes immediately prior to poor prognosis nodes, the median OS was 7.1 months, the mean SIC rate was 25.2%, and 31.3% of patients died without reaching the next node. 46.3% of patients died without reaching a poor prognosis node. The proportion of patients having an SIC at death was 40.9% among all decedents, 50.8% for decedents reaching a poor prognosis node, and 29.3% for decedents who do not reach a poor prognosis node. Conclusions: Clinical pathways can be used as a scalable method to identify patients with metastatic solid tumors and poor prognoses. In our study, only half of patients who reached a poor prognosis node had an SIC before death and nearly half of decedents never reached a poor prognosis node, underscoring the importance of identifying this population to improve end-of-life care. A clinical trial using pathways to identify and deliver interventions to increase SICs is ongoing. [Table: see text]
Colorectal cancer and digital/live screening navigation: Promoting prevention through personalized recommendations and access.
Authors: Kim Newcomer, Andrea Goodman, Marcie Klein, Alex Guevara, Montel Anderson, Nana Kufuor
Journal: Journal of Clinical Oncology (2023)

10566 Background: This project evaluates the effectiveness of an advocacy organization-led digital and live navigation framework aimed at colorectal cancer (CRC) screening completion. The Colorectal Cancer Alliance’s screening quiz guides patients to a clinically valid, personalized CRC screening recommendation with a handoff to live navigation for those at risk. The framework utilizes digital innovation, targeted awareness, and financial support to support populations experiencing the greatest disparities and increase screening intention, behavior, and further health equity in colorectal cancer. This simple intervention is critical due to existing research consistently indicating on-time screening for CRC leads to favorable outcomes. Methods: In July 2022, the Alliance launched an enhanced quiz to improve the CRC screening navigation experience and increase engagement. The new survey instrument was restructured to streamline time to completion while preserving clinically accurate risk stratification. The follow-up navigation protocol was reordered from digital-first to live-first to leverage high-touch strategies earlier in the screening journey and dynamic content was added to the recommendation page to create a more personalized resource. The Alliance also deployed social media and influencer campaigns to increase outreach to at-risk communities. Results: The enhanced quiz delivered over 8,300 CRC screening recommendations and improved the average monthly completion rate (33%) and contact capture rate (14.4%) compared to the previous quiz in 2022 (24%; 8%). The median age of respondents was 55, and 37.2% of the respondents were between the ages of 45 and 64. Of the respondents, 26.7% were male and 73.3% were female. The majority were White (77.1%), 7.3% identified as Black/African American, 5.5% were Hispanic or Latino, and 3% were Asian. Most respondents were symptomatic (67.8%) but 8.1% were asymptomatic high-risk. Respondents (1,078) were triaged to live Alliance patient navigation. Conclusions: This digital and live navigation framework may serve as a strong solution in driving colorectal cancer screening and supporting shared-decision making conversations compared to other available interventions. The framework provides users with robust access to live navigation, educational resources, and support services for CRC screening and diagnosis. The Alliance is uniquely positioned to utilize its communications channels, social media and influencer campaigns to reach at-risk communities with credibility. Data attributed to specific campaigns are still being analyzed, and the Alliance will continue to optimize its navigation protocol and awareness efforts as quality improvement processes allow for a deeper understanding of more inclusive and impactful navigation experiences to close screening gaps among at-risk populations.
Epidemiology, survival, and treatment of liposarcoma subtypes: An analysis of the national cancer database.
Authors: Jared Kennard, Peter T. Silberstein, Marco Braaten
Journal: Journal of Clinical Oncology (2023)

e23535 Background: Liposarcomas are a soft tissue sarcoma which grow in adipose tissue, mainly in the subcutaneous fat of the limbs, and are the most common type of soft tissue sarcoma. Relatively little is known about the epidemiology, prevalence, and survival of various histological subtypes of liposarcoma, therefore, in the largest study to date, we analyzed this patient population using the NCDB. Methods: The National Cancer Database (NCDB) was used to identify patients diagnosed with Liposarcoma from 2004 to 2019 using the histology codes 8850, 8851, 8852, 8853, 8855, and 8858 as assigned by the Commission on Cancer Accreditation program. Kaplan-Meier, Chi-Square, and Cox Proportional Hazards tests were performed. Data was analyzed using SPSS version 27 and statistical significance was set at α = 0.05. Results: We identified 19,351 patients with liposarcoma. Mean age at diagnosis was 59 years for all subtypes and 83.3% of patients were white. Well-differentiated tumors were the most common histological subtype (34.8%), conferred the longest overall survival, and were the largest tumors on average. Round-cell tumors were the rarest (2.4%) and had smaller average tumor size than other subtypes. Patients with the de-differentiated subtype (20.5%) experienced the lowest median survival (70.5 months; p &lt; 0.05) and an increased hazard ratio (HR = 2.8; p &lt; 0.05) after controlling for other subtypes, age, and stage at diagnosis. Surgery was the mainstay of therapy with 90% of patients receiving surgery. 11.2% received additional adjuvant chemotherapy and 2.8% received adjuvant radiotherapy. Round cell and Myxoid tumors were most amenable to resection (89.8% and 88.9% of patients having no residual tumor) compared to only 64.4% of dedifferentiated tumors with complete surgical resection. Conclusions: Liposarcomas are a heterogeneous group of tumors which carry unique patterns of presentation, treatment, and prognosis. Well differentiated tumors are common and amenable to treatment; de-differentiated tumors are more aggressive and remain difficult to fully treat.
Melanoma literacy and predictors for skin self-examination in three western U.S. states: A population-based survey.
Authors: Jacob Nelson, Emile Latour, Brian Detweiler-Bedell, Jerusha B. Detweiler-Bedell, Adrienne Zell, Elizabeth Wenzel, Elizabeth Stoos, Jack Wiedrick, Elizabeth G. Berry, Jane Lange, Ruth Etzioni, Jodi A Lapidus, Sancy Ann Leachman
Journal: Journal of Clinical Oncology (2023)

10558 Background: Melanoma is a leading cause of skin cancer deaths, despite being easily treated when detected early. The objective of this study is to investigate the relationship between melanoma knowledge and beliefs, and the performance of skin self-examination (SSE) in three US states with high incidence rates of melanoma. Understanding the barriers to behaviors such as SSE can aid in the development of interventions aimed at increasing the frequency of early detection and reducing melanoma-related deaths. Methods: A total of 15,000 surveys were distributed to households in the states of Oregon, Washington, and Utah using a stratified two-stage sampling design. The survey responses were weighted to resemble the gender and age distributions of the US census. Rural areas were oversampled to ensure sufficient representation. The first objective of this study was to assess melanoma literacy, including knowledge about melanoma risks, attitudes, and preventive behaviors. Our second objective was to investigate the relationship between self-reported SSE and melanoma literacy, self-efficacy, and belief in the benefits of performing SSE. Results: Among 2,326 respondents, characteristics were similar across states (weighted by census-based population percentages), including demographics, baseline knowledge, performance of SSE, and self-efficacy in performing SSE. Rural respondents had a higher frequency of personal history of melanoma (16.2%) compared to urban respondents (9.9%). Only 21.2% of the respondents demonstrated high knowledge of melanoma. 62.8% of respondents reported having performed a SSE at some point in their lives, with only 24.6% of respondents having done so in the past 2 months. Most respondents (84.8%) believed in the effectiveness of SSE in detecting skin cancer, but only 38.3% and 7.3% reported being "fairly" or "very" confident in performing SSE, respectively. The performance of SSE was most strongly correlated with higher melanoma knowledge, higher self-efficacy, and a personal history of melanoma. Conclusions: The results of the survey indicate that melanoma literacy among respondents in 3 high-risk Western states is limited. A higher level of literacy was associated with a higher likelihood of reported early detection behaviors. This study provides a baseline assessment and serves as a foundation for the development of public health campaigns aimed at promoting prevention and early detection of this deadly cancer.
Phase II study of niraparib in patients with advanced melanoma with genetic homologous recombination (HR) mutation/alteration.
Authors: Kevin B. Kim
Journal: Journal of Clinical Oncology (2023)

TPS9596 Background: There are a limited number of therapeutic options available for metastatic melanoma patients progressing on the checkpoint inhibitor(s) and BRAF-targeting drugs. PARP inhibitors have been approved in the setting of BRCA1/2 germline mutations, and have demonstrated activity in the setting of HR deficiency in other cancers. Documentation of PARP inhibitors in melanoma would have clear clinical impact. We have previously shown that 21-34% of metastatic melanomas harbor at least 1 molecular aberration in the HR pathway, considered pathogenic, and likely leading to HR deficiency. Previously, we demonstrated dramatic regression of tumors harboring HR mutation(s) with PARP inhibitor treatment in a PDX model. These findings provide a strong rationale to evaluate the clinical efficacy of a PARP inhibitor in patients with advanced melanoma with HR deficiency. Methods: This is a single arm, open-label, multi-center phase II trial. The primary objective of the study is: To evaluate the clinical efficacy of niraparib in advanced melanoma patients with HR deficiency. The secondary objectives is to evaluate PFS, OS, and safety profile of niraparib. The key eligibility criteria: Advanced melanoma patients with mutation in any of the following: ARID1A/B, ARID2, ATM, ATR, ATRX, BARD1, BRCA1/2, BAP1, BRIP1, CHEK2, FANCD2, MRN11A, RAD50, RAD51, RAD54B, PALB2 (requires a genetic analysis result performed at any CLIA-certified laboratory) disease progression on PD1-antibody therapy and if BRAF mutant, BRAF/MEK inhibitors ≥ 18 years of age; ECOG PS ≤ 1; prior systemic cytotoxic therapy ≤1 regimen; no limit on number of prior immunotherapy or targeted therapy regimens. No symptomatic brain metastasis; active brain lesions ≥6 mm size, or requiring steroid treatment Patients will be treated with oral niraparib once daily (28-day cycle); the dose will be 300 mg (if weight ≥77 kg and platelet counts of ≥150,000 µL); otherwise 200 mg RECIST 1.1 will be used to evaluate clinical response every 8 weeks. Adverse events will be recorded according to CTCAE version 4.03. The primary study endpoint is overall response rate. Simon’s optimal 2-stage design is proposed. With significance level of5% and 80% power, our null hypothesis that the true response rate is 0.10 will be tested against a one-sided alternative: H0: p ≤ 10%, a response rate of no real interest VS H1: p ≥ 30%, a response rate that would be of considerable interest 10 patients will be analyzed for a response evaluation in the first stage of the study, and 19 in the second stage, for a total of 29 patients. If the response rate is 10% (1/10) or less at the end of the first stage, further accrual will be terminated. With 2 or more responses in the first stage, accrual will continue to a total of 29 patients for this cohort. The null hypothesis will be rejected if ≥6 responses are observed in a cohort of 29 subjects. Clinical trial information: NCT03925350 .
An evaluation of the financial toxicity amongst older patients with cancer in India.
Authors: Anant Ramaswamy, Abhijith Rajaram Rao, Vanita Noronha, Renee Basu, Anita Kumar, Anupa Pillai, Arshiya Sehgal, Sharath Kumar, Vikram Gota, Shripad Dinanath Banavali, Kumar Prabhash, Rajendra A. Badwe
Journal: Journal of Clinical Oncology (2023)

12048 Background: Financial toxicity (FT) of cancer is prevalent among older patients in high-income countries, but there is no data about the financial burden faced by older patients in India. This study aimed to explore the FT of cancer among older Indian patients. Methods: This was a cross-sectional observational study conducted in the geriatric oncology clinic of Tata memorial hospital (Mumbai, India). Patients aged 60 years and above with cancer were included. Patients and their relatives were enquired regarding their occupations, monthly income, and source of funding for cancer treatment. The modified Kuppuswamy scale was used for stratification of socio-economic status (SES). The financial burden was evaluated using the Comprehensive Score for Financial Toxicity-Functional Assessment of Chronic Illness Therapy (COST-FACIT) scale. In addition, the Consumer Financial Protection Bureau Financial Well-Being Scale and the 28 th question of QORTC QLQ-C30 were used to assess the financial quality of life. Results: Between June 2022 and January 2023, 498 patients were included. The median age was 67 (IQR, 63-72) years, and 360 (72.3%) were male. Common malignancies included gastrointestinal (199, 40.0%), lung (169, 34.0%) and urological (63, 12.7%); 320 (64.4%) had metastatic disease. According to the modified Kuppuswamy scale, most of the participants belonged to upper-lower SES (223, 44.8%), followed by lower-middle (115, 23.1%), upper-middle (97, 19.5%), lower (59,11.8%) and only 4 (0.8%) belonged to upper SES. The source of funding was mostly from family members (264, 53.9%), insurance (72, 14.7%), while 59 patients (12.0%) did not require external support. Sixty-one (12.4%) had to borrow money, twenty-one (4.3%) participants had taken a loan, and 13 (2.6%) had sold their assets for the purposes of treatment. Moderate-severe burden on COST-FACIT was present in 165 (33.1%), whereas 333 (66.9%) experienced no or mild burden. High FT was associated with lower socioeconomic status (OR: 4.69, 95%CI 2.47-8.91, p-value &lt; 0.001), poor financial well-being (OR: 9.35, 95%CI 5.52-16.46, p-value &lt; 0.001) and poor score on Financial quality of life (OR: 5.16, 95%CI 3.39-7.86, p-value &lt; 0.001). Conclusions: In older Indian patients with cancer, there is a high prevalence of financial burden and is associated with poor socioeconomic status, poor financial well-being and poor financial quality of life. More than half the patients depended on their family members to meet the cost of cancer treatment.